CHS P M W G - Canadian Hemophilia Society vital sign.pdf · representative of other people with bleeding disorders, the CHS developed a survey which was sent to all the Hemophilia

The Canadian Hemophilia Society (CHS) exists to improve the quality of life of persons with hemophilia and otherinherited bleeding disorders and to find a cure.

The CHS consults qualified medical professionals before distributing any medical information. However, the CHS does not practice medicine and under no circumstances recommends particular treatments for specific individuals. In all cases, it is recommended that individuals consult a physician before pursuing any course of treatment.

The mention of any product, service, or therapy in this booklet is not an endorsement by the CHS and we encourage you to discuss any decisions about your medical treatment or care with your primary health care provider.

The CHS would like to acknowledge those people who contributed to the development of PAIN – The Fifth Vital Sign.

CHS PAIN MANAGEMENT WORKING GROUP

CO-CHAIRS:MAUREEN BROWNLOW, RSW, IWK Health Centre, Halifax, Nova ScotiaPAM WILTON, R.N., Vice-President, Canadian Hemophilia Society

JENNY AIKENHEAD, Physiotherapist, Alberta Children’s Hospital, Calgary, AlbertaNANCY DOWER, M.D., Walter Mackenzie Health Sciences Centre, Edmonton, AlbertaSOPHIA GOCAN, R.N., member, CHS National Program Committee, Ottawa, OntarioANN HARRINGTON, R.N., St. Michael’s Hospital, Toronto, OntarioHEATHER JARMAN, Pharmacist, St. Joseph’s Health Care, London, OntarioPETER LEUNG, M.D., Pain Management Service, St. Michael’s Hospital, Toronto, Ontario

CONTRIBUTORS:JENNY AIKENHEAD, Physiotherapist, Alberta Children’s Hospital, Calgary, AlbertaMAUREEN BROWNLOW, RSW, IWK Health Centre, Halifax, Nova ScotiaSEAN CREIGHTON, person with hemophilia, OntarioIAN DEABREU, person with hemophilia, OntarioCHRISTINE DEMERS, M.D., Hematologist, FRCPC, Quebec City, QC CHRISTINE DERZKO, M.D., Obstetrician-Gynecologist, FRCSC, Toronto, ONJOANNE DOUGLAS, M.D., Anesthesiologist, FRCPC, Vancouver, B.C.NANCY DOWER, M.D., Walter Mackenzie Health Sciences Centre, Edmonton, AlbertaSOPHIA GOCAN, R.N., member, CHS National Program Committee, Ottawa, OntarioANN HARRINGTON, R.N., St. Michael’s Hospital, Toronto, OntarioD. WILLIAM C. JOHNSTON, BMedSC, M.D., FRCS(C), Orthopedic Surgeon and

Site Medical Director of the University of Alberta Hospital, Edmonton, AlbertaMICHEL LALONDE, person with hemophilia, OntarioPETER LEUNG, M.D., Pain Management Service, St. Michael’s Hospital, Toronto, OntarioFRANCIS ROY, person with hemophilia, QuebecPAM WILTON, R.N., Vice-President, Canadian Hemophilia SocietyROCHELLE WINIKOFF, M.D., Hematologist, FRCPC, Montreal, QC

Project CoordinatorCLARE CECCHINI

EditorDAVID PAGE

Graphic Design: PAUL ROSENBAUM, Montreal, QC

Illustrations: DARCIA LABROSSE, Gatineau, QC

THE CHS WOULD LIKE TO THANK WYETH PHARMACEUTICALS FOR PROVIDING

THE FUNDING FOR THE DEVELOPMENT AND PUBLICATION OF THIS RESOURCE.

Note: Bleeding disorders affect both men and women. The use of the masculine in this text refers to both.

For further information please contact:

Canadian Hemophilia Society625 President Kennedy Avenue, Suite 505Montreal, Quebec, H3A 1K2Tel: (514) 848-0503Toll Free: 1-800-668-2686E-mail: chs@hemophilia .caWebsite: www.hemophilia.ca

ISBN 0-920967-55-8

A R E S O U R C E O N M A N A G I N G P A I N F O R P E O P L E W I T H B L E E D I N G D I S O R D E R S

PAINThe Fifth Vital SignT A B L E O F C O N T E N T S

Introduction ..................................................................................................................5

Chapter 1Pain – The Fifth Vital Sign ....................................................................................7

Chapter 2The Impact of Pain on the Family ................................................................11P R O F I L E My Cat Helps Me to Manage My Pain ......................................................15

Chapter 3The Role of the Comprehensive Care Team in Pain Management................................................................................................17

Chapter 4Advocating for Better Pain Management ................................................23

Chapter 5Effective Use of Opioid and Non-Opioid Analgesic..........................29P R O F I L E I Like to Call Pain the “Dragon”................................................................37

Chapter 6Physiotherapy – Another Approach to Pain Management ........39P R O F I L E Not All Kids My Age Are in the Same Boat ..............................................45

Chapter 7Orthopedic and Surgical Management of Pain ..................................47P R O F I L E Five Joint Replacements/Fusions… And I Still Have a Slice ..................51

Chapter 8Pain Management for Women with Bleeding Disorders..............53P R O F I L E One Woman’s Experience ..........................................................................57

Chapter 9Complementary and Alternative Approaches to Pain Management ................................................................................................59

Resources ......................................................................................................................66

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Introduction“It is difficult to convey how chronic pain totally invades and affects all aspects of your life. It is aconstant inescapable entity. And it is difficult to makeothers understand. Everyone has endured pain, but notthe kind of pain that you must live with 24 hours a day,7 days a week, day and night.”

This eloquent statement was expressed by a patient interviewedduring an informal survey on the impact of pain experienced bypeople with hemophilia.

Members of the bleeding disorder community have been aware forsome time that their pain, both acute and chronic, hasn’t alwaysbeen appropriately managed. The topic was discussed at a panelpresentation held during the Canadian Hemophilia Society (CHS)Medical Symposium at Mont-Tremblant, Quebec, in May 1999.Three adults shared their experiences with pain, its impact on theirlives and their difficulty finding effective care. A pain specialistspoke about the range of options available to deal with severe pain,the barriers to getting effective pain treatment as well as two veryimportant issues—the education of health care professionals aboutthe various aspects of pain assessment and treatment, and the needfor pain assessment being a part of the Hemophilia TreatmentCentre’s routine process.

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In the early fall of 2001, to determine whether the experiencesdescribed by members of the Mont-Tremblant panel wererepresentative of other people with bleeding disorders, the CHSdeveloped a survey which was sent to all the Hemophilia TreatmentCentres (HTCs) in Canada. It was administered through aninterview with an adult, teen, or parent of a younger child. Theinterviewers asked about the person’s experience with acute andchronic pain, his personal support systems, his opinion of his qualityof life, and, if pain was an issue, what strategies he used to deal withit. Eighteen interviews were conducted in all. Although the numberswere small, the opinions expressed were consistent across all clinics.

In summary, the results reinforced the message that pain experiencedby people with hemophilia is not well understood, assessed ortreated. Forty percent of the people interviewed reported havingpain all the time. Children also have pain and often have difficultydescribing the level of their pain. The most common reasons givenfor not taking medication are that the pain isn’t considered badenough, the side-effects are a problem or that access to a painspecialist is difficult.

When asked what the CHS could do to help, one person said,“Encourage open discussion of pain and any and all subjects related to it.Suffering along in silence is certainly not the way to cope.”

To this end, Hemophilia Today, the newsmagazine of the CHS, haspublished a series of feature articles related to pain managementwritten by knowledgeable people.

At the CHS 50th Anniversary Weekend in Montreal, May 8-11, 2003,a consumer workshop provided an opportunity for people withbleeding disorders and their families to share experiences and ideas,hear a presentation on treatment options, experience advocacytraining and discuss options with health care providers.

With the knowledge gained from these initiatives, the CHS is nowproud to publish this resource entitled Pain – the Fifth Vital Sign.

“Encourage opendiscussion ofpain and anyand all subjectsrelated to it.Suffering alongin silence iscertainly not theway to cope.”

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INTRODUCTION


PAIN – The Fifth Vital SignPeter Leung, M.D. Pain Management Service, St. Michael’s Hospital, Toronto

The most common reason for seeking medical care is pain.Many adults and children in the bleeding disordercommunity, especially those with chronic joint damage, say that pain is the major element affecting their quality of life. Yet it is only recently that attention is starting to be paid to this serious problem.

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The questions which will be addressed in this chapter are:

• What is the origin of the term “pain - the fifth vital sign”?• What is pain?• How do we measure pain?• Why is recognition of the “fifth vital sign” so important?


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What is the origin of the term “pain - the fifth vital sign”?

Most health care providers and consumers are used to having the four routinevital signs recorded. Blood pressure, pulse rate, temperature and respiratory rateare documented every time a patient presents for a medical assessment. Yet themost common reason for seeking medical care is pain. In 1995, the President ofthe American Pain Society, Dr. James Campbell, coined the term “fifth vitalsign”, suggesting that “quality care means that pain is measured and treated”.When we add the measurement of pain as one of the essential records for allpatients, we are finally focusing on the main cause for seeking medical care.

Health Regulatory Boards in many American states have legislated guidelines tomandate pain assessment with all patient contacts. Pain is now officiallyconsidered the fifth vital sign by the Joint Commission on Accreditation ofHealthcare Organizations; in other words, all health facilities have to includepain as the fifth vital sign for that facility to be accredited. The CaliforniaGovernor recently signed into law the Health and Safety Code (HSC). As partof this bill, HSC 1254.7 reads:

(a) It is the intent of the Legislature that pain be assessed and treatedpromptly, effectively, and for as long as pain persists.(b) Every health facility licensed pursuant to this chapter shall, as acondition of licensure, include pain as an item to be assessed at the sametime as vital signs are taken. The health facility shall insure that painassessment is performed in a consistent manner that is appropriate to thepatient. The pain assessment shall be noted in the patient’s chart in amanner consistent with other vital signs.

Surveys report 14% of the population have sick days due to pain, 75% use over-the-counter pain medications and 35% use prescription pain medications.Chronic pain accounts for more total annual costs than other chronicconditions such as heart disease, high blood pressure and diabetes.

What is pain?

In the hemophilia community, a new bleeding episode is recognized primarilybecause it causes pain. Hemarthrosis – bleeding into the joint – is most common. The pain from the inflammatory reaction of blood in the jointcan become severe; the joint swelling then further aggravates the pain. Bleedinginto the muscle also gives rise to pain and swelling and, if unabated, can damagenerves, tendons or other structures. Other sites may or may not be as painfuland each person with hemophilia will have different common sites.What then is pain? Pain is very difficult to define in words but the InternationalAssociation for the Study of Pain did try.


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1PAIN

THE FIFTH

VITAL SIGN

Most health careproviders andconsumers areused to having thefour routine vitalsigns recorded.Blood pressure,pulse rate,temperature andrespiratory rateare documentedevery time apatient presentsfor a medicalassessment. Yet the mostcommon reasonfor seekingmedical care is pain.

“An unpleasant sensory and emotional experience associated with actual orpotential tissue damage, or described in terms of such damage.”

Pain is always subjective. The person with pain is the one who decides if there is pain or not. It is always unpleasant and since we learn of pain from injury inearly childhood, it is described in “damage” terms. Lastly, it is an emotionalexperience. We should note that there does not have to be actual damage tospecific areas of the body to cause pain. In other words, when pain becomeschronic, we may not see the actual injury or the physical response such aschanges in heart rate, blood pressure, or even grimacing and crying out.

Some books or pamphlets on hemophilia might talk about individual differencesof pain perception but the pain level is yours and yours alone. Do not feel thatyour pain is less significant than that of others, and certainly you must not feelguilty or embarrassed because you need medication or treatment for both acuteand chronic pain. Actually, inadequate initial pain management may be a causefor future abnormal pain behaviour.

The aim of pain control within the first few hours of a bleeding episode is reliefof suffering. With chronic pain control there is the added aim of maintainingdaily function. A balance among the efficacy of pain relief, the side effects ifany, and the ability to be as functional as possible is the final goal ofmanagement. Any and all modalities of pain management—physical,pharmacological and psychological—should be incorporated into the scheme if beneficial.

How do we measure pain?Unlike its vital sign counterparts, however, there is no gadget to measure pain;it must be evaluated by asking questions and observing behaviour. And, unliketemperature or blood pressure, getting accurate data about pain depends on two-way communication between the health care provider and the patient. Theseare some helpful tools:


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THE FIFTH

VITAL SIGN

Unlike its vital signcounterparts,however, there is no gadget tomeasure pain; it must beevaluated byasking questionsand observingbehaviour.

Numeric Rating Scale:Instructions: Choose a number from 0 to 10 which indicates how strong your pain is right now.

No pain at all = 0 1 2 3 4 5 6 7 8 9 10

Visual Analog Scale:Instructions: Mark on the line below how strong your pain is right now.

No pain at all __________________________________________________ The worst pain imaginable

Category Scale:Instructions: Choose the word below which best describes how your pain feels right now.

Mild Discomforting Distressing Horrible Excruciating

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For children aged 3 and older, a range of tools is available for self-reporting andbehaviour observation; children from approximately age 5 are able to reliablycomplete a VAS (Visual Analog Scale) score. One useful tool might be the“Face Scales”.

Once we measure the level of pain, we can go ahead with the treatment plan.The clinician may quantify it on a single dimension using, for example, a singleVAS, but this approach risks being too simplistic. Pain has sensory, emotional,motivational, cognitive, and behavioural dimensions. We must be aware thatclinical pain intensity does not necessarily vary directly with the extent orseverity of clinical pathology. Hence the individual’s subjective responseoverrides the clinician’s bias of labeling the patient. Every patient deserves themost effective treatment, not what the provider feels he/she should have.

Why is recognition of the “fifth vitalsign” so important?

Many barriers impede humane and competent assessment and management.Patients and health care professionals often differ culturally and socially.Treatment for chronic pain and chronic illness may be unavailable,unaffordable, or not covered by health insurers. The variability andunpredictability of pain in hemophilia make effective coping difficult, and cancontribute to an adversarial relationship between patients and health careprofessionals.

Fortunately, there is already a major shift in attitudes toward pain medications.Not so long ago, there was a reluctance to prescribe pain killers because theymight cause addiction or interfere with recovery. Research has shown that therisk of clinical addiction is overestimated and, in fact, quite rare at the dosagesused for pain management. What’s more, recovery takes place faster when painis properly managed. Unrelieved pain can actually interfere with healing andturn acute pain into a chronic problem.

Recognizing pain as the fifth vital sign puts assessment at the forefront and setsthe tone for cooperation. Asking “What level is your/your child’s pain?” bringsthe family and the provider into an alliance against the suffering. Once we haveall parties on the same side, a therapeutic plan can be developed for futureepisodes and daily chronic pain. Then, there is no fear of the agony of the nextepisode because the patient can assume “control” and knows there is a path tofollow with back-up plans in place. This all stems from a simple assessment tool,what we refer to as the “fifth vital sign”.

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THE FIFTH

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The Impact of Pain on the Family

Maureen Brownlow, RSWIWK Health Centre, Halifax, Nova Scotia

For many years, pain has been seen as an unavoidablepart of the condition—something to be suffered, oftenalone and in silence. In fact, this acute and chronic painhas never been suffered alone. Family members havealways been aware of the suffering, although limited intheir resources to deal with it.


• How do we define family?• How are families affected by the pain of a family member?• What are some ways families deal with the challenges of pain?


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People who live with hemophilia and other bleeding disorders are veterans inthe acute care of bleeds. They are, however, strangers in the uncharted waters ofeffective pain management. For many years, pain has been seen as anunavoidable part of the condition—something to be suffered, often alone and insilence. In fact, this acute and chronic pain has never been suffered alone.Family members have always been aware of the suffering, although limited intheir resources to deal with it.

Within the range of issues faced by people with a bleeding disorder, pain hasbeen an invisible presence. Yet it casts a net beyond the person who is directlyaffected. It is an added burden on top of the many already faced by the peoplethemselves and their families.

How do we define family?

Who is “family”? Each family creates its own definition. Mother, father, step-parents, brothers, sisters, step-siblings, half-siblings, grandparents, aunts, uncles,cousins, in-laws… For many people, “family” includes close friends who sharecommon interests and concerns. In families, support and care for each other is alifelong commitment, stretching over miles and time zones, and nurtured bydirect contact, phone, e-mail or “snail mail”.

How are families affected by the pain of a family member?

Families are affected by the pain of a family member in a number of ways,depending on the family situation, the age and role within the family of theperson with the bleeding disorder: a child, a teenager or an adult with familyand career responsibilities. Their pain is experienced on both the physical andemotional levels, as they struggle with feelings of futility and hopelessness.Young people miss school, with the resultant impact on their learning, as well ason their social lives. The young person may be seen as “different” because of alimp, crutches or a wheelchair. One grade 7 student with mild hemophilia and apainful knee bleed that required 6 months of treatment spoke of having hispeers accuse him of “faking to get attention” because he used crutches in school.Building an arsenal of effective weapons to deal with pain begins with theperson who has the pain. He gives out signals, either directly or indirectly, thatthe usual pain relief measures aren’t working. Often, boys and men are reluctantto complain. Family members may notice a mood change or a decrease ininterest in favourite activities. This may result in more bleeding disorder clinicvisits and/or visits to a variety of medical and other health care specialists andmajor testing, such as CAT scans or MRIs. For many Canadians, thesespecialized services are a distance from home. Following the visit, there may berecommendations for treatments at home, referrals to other services and follow-up visits.


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2THE IMPACT

OF PAIN ON

THE FAMILY

Families are affected by the pain of a familymember in a number of ways…


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THE FAMILY

Here are some examples of the thoughts of different people in a family

when dealing with the impact pain has on them.

JOEY is a teenage child with a bleeding disorder.

Joey: “Is any of this going to make me feel better? I’m going tomiss the dance tonight. Not that anyone wants to dance with methe way I move. I wish Mom and Dad wouldn’t fuss so much,although it helps to have someone here. I hate talking to newdoctors. They just don’t get it.”

Mother: “I hope this will help. He’s missing too much school andhe seems so down. How will I make up the time I’ve taken off forthese visits and when I had to stay home? These splints anddrugs are expensive. I wish we had a health plan. I have to tryand remember what the doctor said so I can tell Joey’s father. Ihope I get home before the daycare closes. How will Joey manageif this doesn’t work?”

Little sister: “What’s the matter with Joey’s knee? Histreatment used to fix him. I wish I could miss school sometimes.I bet they’re going to the gift shop before they leave the hospital.I wonder why Mom and Dad are so grouchy lately.”

Grandparents, aunts, uncles, cousins: “Is Joey getting goodcare from that clinic? You’d think these doctors would be able todo more than they did when his Uncle Fred had sore joints 25years ago. How can we help him and his parents?”

SAM is 60 years old with a wife, adult children and grandchildren.

Wife: “I wish he’d let me go to his clinic visit with him. I don’t think that the doctor is getting the whole story.He’s missing a lot of work, doesn’t want to do anything,and sleeps in the spare room most nights.”

Sam: “What’s the point of going to the clinic? Theydidn’t help anyone else I know. How will I make itanother year until I retire? I feel sorry for my wife. We had big plans for after the kids left.”

Children: “I read on the Internet that people withhemophilia can have joint replacements now. I hopehe asks about it at the clinic.”

I wish Mom and Dadwouldn’t fuss so much,although it helps to havesomeone here.

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What are some ways families deal with the challenges of pain?

Pain affects people and their families emotionally, socially, academically,financially and spiritually. All families have established ways of dealing withlife’s challenges. Families in the bleeding disorder community have adapted tothe physical demands of their condition by educating themselves about theirparticular situations, learning to do home treatments and by learning about safeactivities. On the emotional and spiritual level, families develop internalstrengths: positive coping abilities, openness in working with the members ofthe bleeding disorder comprehensive care team, creativity in dealing withproblems and a sense of hope for the person’s future.

Effective pain management is a new frontier for comprehensive care teams, theCHS and its members. It is hoped that this initiative will result in an increase inknowledge about people’s options and help them rediscover a sense of hope.One of the main benefits of the Pain Management Program is to bring pain andthe scope of its impact out into the open. This includes talking about it in andamong families, joining together to share information and identifying areaswhere work needs to be done—essentially what people with hemophilia andother bleeding disorders have done for years at the individual, family, chapterand national levels.


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One of the mainbenefits of theproject isbringing painand the scope ofits impact outinto the open.

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My Cat Helps Me to Manage My Pain

Francis Roy gave this testimonial at the CHS workshop on painmanagement held in Montreal on May 10, 2003.

My name is Francis Roy. I am 13 years old and I live in Mont-Laurier with my parents and my younger sister, Cassey. Mont-Laurier is a small town, a three-hour drive north of Montreal.

I am a severe hemophiliac with factor IX deficiency. Ideveloped a factor IX inhibitor when I was still a baby. People tellme that when I was a kid I was a little rascal who wanted to tryeverything. This probably partly explains why I had to behospitalized so many times to treat bleeding. Dr. Rivard triednumerous times to get rid of my inhibitor but without success.

I now know I have to get treatment as soon as possible whenI think I am bleeding. Sometimes I think I can get away withouttreatment and I wait before telling my mother. This is often howthe pain gets very bad (but not always). Since I bleed quite often,I am often in pain, which I don’t like; this is why I thinkmanaging the pain is very important.

When I’m in pain, I tend to express it by complainingverbally (to tell the truth, by screaming). My family doesn’t liketo see me suffer and they do their best to comfort me and distractme. My mother gives me my Niastase and also morphine for thepain if necessary. My sister tries to watch TV with me. My fathertalks to me about hunting and fishing, which I’m crazy about,and we often look at magazines together.

I can inject my treatment myself but when I’m in a lot ofpain I prefer my mother does it for me.

Sometimes applying ice helps a bit. I haveseveral orthotics I can use to immobilize theaffected joint if the bleeding is in the joint.I also use crutches or my wheelchairwhen I have to. Because I hadmany hemorrhages, I didn’t goto school for a few years. Ihave been back at schoolsince September 2002 and Ilove it. I have a lot lessbleeding because I am moreactive and my muscles arestronger. (continued on next page)

P R O F I L E

I am often inpain, which Idon’t like; thisis why I thinkmanaging thepain is veryimportant.

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Last summer I rode my bike and had to use my leg to keepmy balance. I didn’t think I had hurt myself but I started to bleedin a large muscle in my abdomen – the psoas. I was doubled up inmy wheelchair when I got to Ste-Justine. I was in great pain andthe morphine my mother gave me every 3 or 4 hours didn’tcontrol my pain. At the hospital the pain management team putme on a pump so I could administer extra doses of morphinemyself when I felt pain. I didn’t have to ask for and wait to getmy painkiller. It was also very useful when I started to movearound again with the help of Nichan, my physiotherapist. Imanage my pain and can do my exercises better. When I’m notbleeding, I don’t need anything for pain.

One last thing. When I’m at home, I find that my cat helpsme a lot to manage my pain. I see a huge difference since hebecame part of our lives.

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• Why is pain assessment important?• How is pain assessed?• Who are the comprehensive care team members involved in pain assessment?• How does the comprehensive care team treat pain?• Who needs education about the pain experienced by persons with bleeding

disorders?

The Role of the Comprehensive Care Team in Pain ManagementAnn Harrington, R.N.St. Michael’s Hospital, Toronto, Ontario

Maureen Brownlow, RSW IWK Health Centre, Halifax, Nova Scotia

Nancy Dower, M.D.Walter Mackenzie Health Sciences Centre, Edmonton, Alberta

Pain is a complicated phenomenon. It has an impact on many areas of a person’s life and is influenced bymany factors.

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Why is pain assessment important?

The first step in the treatment of pain is a thorough assessment. If the pain isacute, new bleeding must be suspected. If the pain is chronic, persistent tissuedamage is likely. The management of these scenarios differs. An individual’sexperience of pain is affected by his age, physical condition, gender, culture,attitude toward life and personal and family supports. The result of the painassessment influences the choice of treatment. Intractable pain may neednarcotics, while low-level discomfort may be managed by non-medicalinterventions.

How is pain assessed?

The person experiencing the pain is the best judge of the character of the pain.The most useful tool that a hemophilia clinic team member will use to assesspain is a good set of listening skills.

• How is the pain described? • What words are used? Throbbing? Burning? Grinding? • What were the events surrounding the start of the pain? • What do parents, partners or other accompanying family members have

to say about the pain?

This is followed by a careful clinical examination.

Many different pain assessment tools have been developed to help health careproviders assess and treat pain. (See Pain – The Fifth Vital Sign on page 7.)

Pain diaries are also helpful: preceding events, intensity of pain, activity level,interventions and response to treatment can all be recorded. In addition todetermining how much pain, we also need to know what makes the pain worse(for example, climbing stairs); what makes it better; and whether it interfereswith activities of daily living (school, work, recreation, personal relationshipsand sleep).

In children, pain and distress coexist. Distress is often a manifestation of pain,but distress can also reflect fear, anxiety, separation from family and agitatedbehaviour. If distress can be managed, pain may become less of an issue.

Unfortunately, young children do not have the vocabulary to tell us whensomething is wrong. Severe pain results in crying and inconsolability, but lesserpain may cause withdrawal, decreased activity and irritability. Parents are key tothe recognition of a child’s pain.


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3THE ROLE OF THE

COMPREHENSIVE

CARE TEAM

IN PAIN

MANAGEMENT

An individual’sexperience of pain is affected by hisage, physicalcondition, gender,culture, attitudetoward life and personal andfamily supports.

Part of pain assessment is assessing the person’s/family’s understanding of the pain.

• Do they see the connection between acute pain and the recommen-dation for R.I.C.E. (rest, ice, compression and elevation)?

• Do they recognize the need for an infusion? • What are the barriers preventing the person or family getting

appropriate pain control?

Who are the comprehensive care teammembers involved in pain assessment?In various ways, all of the comprehensive care team membersare involved in the assessment of pain. The person withthe bleeding disorder and, in the case of a young child,his/her parents, are at the centre of the process. Thepoint at which the topic of pain, either acute orchronic, is presented to the team can vary. In ascheduled comprehensive care clinic visit, it may bementioned first to the nurse who frequently is theperson who does the initial assessment; to thephysiotherapist or physician when joints are beingexamined; or to the social worker during a discussion of work, school or family dynamics.

How does the comprehensive care teamtreat pain?The nurse coordinator can ensure that pain is assessed and treated by theappropriate team member. Good assessment and management of both acuteand chronic pain can be helped by maintaining good bleed records andinfusion diaries. Bleeding patterns can be quickly noted from accuraterecords. Factor doses may need to be adjusted to ensure good hemostasis.More than one treatment may be necessary. Short term prophylaxis may berecommended to manage a target joint.

The hematologist can develop a management plan for both acute and chronicpain, which could include medication. Only a physician may prescribe painmedication. If you do not live close to the Hemophilia Treatment Centre(HTC), your family physician will need to be involved in the managementof your pain. In some parts of Canada, HTCs are located in large healthcentres, which include pain management teams made up of physicians,nurses, physiotherapists, psychologists, social workers and vocationalcounselors who have specialized knowledge in the management of all aspectsof pain, using both traditional medical interventions as well as alternativetherapies. You may benefit from a referral to one of these.

doctor (hematologist)

social worker


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The personwith thebleedingdisorder and,in the case of a young child,his/her parents,are at thecentre of theprocess.

nurse coordinator

physio-therapist

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The physiotherapist will make various recommendations for treating acute orchronic pain. The overall goal is to prevent secondary complications due topain, such as tight musculature or poor mobility.

The social worker can help the patient manage the life complications that occurdue to pain.

Comprehensive care teams in pediatric and adult centres often have closeworking relationships with rheumatology and orthopedic teams whose expertisecan be called upon to treat pain. Treatments such as joint injections,synovectomies or joint replacements are some of the options which may bediscussed with these teams.

Women with von Willebrand Disease or another bleeding disorder may bereferred to an obstetrician/gynecologist familiar with managing excessive bleedingin women.

Additional challenges that some people with hemophilia live with areinhibitors, HIV and/or hepatitis C, adding another layer of issues to consider inthe assessment and treatment of pain. With the introduction of ProteaseInhibitors (PIs) for the treatment of HIV disease, a significant increase inbleeding was noticed only in patients with bleeding disorders, leading to pain.The bleeding was not typical of the usual joint or muscle bleeds but more softtissue bleeding. With newer PIs being introduced, the hemophilia patient needsto remain vigilant and report immediately any unusual swelling or pain.

This underlies the importance of the coordinating role of the comprehensivecare team as the person with the bleeding disorder and his/her family worktoward an effective approach to pain.

We need toeducate ourselvesabout assessmentand treatmentresources that areavailable at thelocal and regionallevels.

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Who needs education about the painexperienced by people with bleedingdisorders?We all do. People with pain, and their families, need to be aware that pain is amanageable condition. They need to be able to recognize the difference betweenpain from acute bleeds and from chronic conditions. They need to be aware ofthe first course of action for acute bleeds—R.I.C.E. and an infusion—and whento call the treatment team if a bleed isn’t resolving appropriately.

Visits to the clinic, CHS local and national meetings, family weekends, youthcamps and the CHS newsmagazine, Hemophilia Today, are some of theopportunities that the bleeding disorders community has to increase awarenessof the issue. Team members need to be aware of the types of pain that bleedingdisorders can cause and to consistently include pain as part of their assessment.We need to educate ourselves about assessment and treatment resources that areavailable at the local and regional levels.

Pain doesn’t need to be suffered in silence. Discuss it with your clinic team andwork out a plan that suits you. To paraphrase a theme from a CHS parentworkshop, “You’re worth it”.


CHAPTER

3THE ROLE OF THE

COMPREHENSIVE

CARE TEAM

IN PAIN

MANAGEMENT

Pain doesn’tneed to besuffered in silence.Discuss it with your clinicteam and workout a plan thatsuits you.

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22

23


Advocating for Better Pain ManagementPam Wilton, R.N.Vice-President, Canadian Hemophilia Society, London, Ontario

“My physician told me she never realized how much painpeople with hemophilia had until she went to a CHSworkshop on pain management. She said she couldn’tbelieve how well her patients hid the pain.”


CHAPTER

4


• What is advocacy?• Who can be an advocate?• Why is advocacy important?• What can you do if your pain is not well managed?• What can you do if your physician refuses to refer you?• What are some effective communication strategies?• What can you do to ensure your pain is taken into account?

23

What is advocacy?

Advocacy is defined as a process of defending or promoting a cause on behalf ofoneself and/or others. An advocate is someone who works through that process.

Who can be an advocate?

You are your own best advocate. Depending on the situation, the role ofadvocate can be played by almost anyone. In the context of health care and,more specifically, pain management, there are individuals who naturally play therole of advocates. Nurses are the members of the health care team most oftenidentified as advocates. Fortunately, most nurses accept this role as an importantpart of their practice and are very effective. The nurse in your HemophiliaTreatment Centre (HTC) is no exception. She already knows your history, yourcurrent health status, your support systems and your ability to follow through ontreatment plans. Social workers and physiotherapists can also be advocates. YourHTC is part of a network of clinics across Canada and therefore thecomprehensive care team has an established network of expertise that they cantap into for help in difficult situations.

A family member such as a spouse, parent or sibling is also a good choice, as is aclose friend.

Why is advocacy important?

Pain should be viewed as a separate problem. It is most often defined as anunpleasant sensory and/or emotional experience primarily associated with tissuedamage. Some experts, however, define it as a disorder of the nervous system.Therefore, you may need to seek help from experts in that field. It is sometimesdifficult to get a referral to a pain management specialist because many peoplesimply do not understand the extent of the pain. Pain is subjective andextremely difficult to measure. A bleeding disorder complicates managementand expertise is often required to develop an effective management plan.

Fatigue, immobility, frustration and anger are common in patients with chronicpain, making it difficult to communicate. When pain persists, confidence andrespect for health care professionals can quickly erode.

Effective advocacy can help you communicate competently in a calm, yetassertive way, working with health care providers to develop an effective painmanagement plan.


CHAPTER

4ADVOCATING FOR

BETTER PAIN

MANAGEMENT

Effectiveadvocacy can help youcommunicatecompetently in a calm, yetassertive way,working withhealth careproviders todevelop aneffective painmanagementplan.

24

What can you do if your pain is not wellmanaged?Pain management can be extremely complex. First, ask your physician why hewill not consider stronger medications. Once you know why, you will be able tosolve the problem.

The reality may be that your own physician wisely recognizes that your painmanagement requires knowledge and skill beyond his experience. If heacknowledges this, you can ask for a referral to a pain clinic or a pain specialist.

However, if he believes your pain is well controlled on the medications andtreatments (e.g. physiotherapy) he has prescribed and you disagree, you will stillneed to ask for a referral to a specialist for a second opinion. You have a right toask for another opinion but, unfortunately, your physician may not be willing tomake this easy for you. Ask for his help. This will…

• convince him that you really do need help. He may revise histreatment plan.

• give him an easy way out. He will quickly refer you to someone else.

If your physician suggests that, in order to deal with severe pain, you have beenusing your pain relief medications excessively or inappropriately, remain calm.This is your opportunity to try again to impress upon him the extent to whichyour life is affected by pain. Ask him why he thinks this. It may be something assimple as miscommunication. If, in fact, the physician is right, this is also youropportunity to do something about it. Again be prepared to be open and honest.Work with your physician and the resources available to you to manage theproblem. A family physician can also facilitate a referral.

What can you do if your physicianrefuses to refer you?Ask the physician to explain why he is refusing to refer you to a specialist. The response will help you to understand why he is reluctant. It may make sense to you and you may be willing to accept the decision. If not, the answerwill still help you decide what to do next.

Most specialty clinics require a physician referral. You could try and find a new physician to make the referral, but most people with bleeding disorders are treated at a HTC and, in most cities, there is only one—the number ofphysicians is limited. Given the shortage of family physicians in Canada, it maybe difficult, and perhaps impossible, to find a new one. Besides, you need painrelief immediately. Frequent visits to the ER for pain management mayeventually result in a referral, but for many reasons this should be reserved as alast resort.

It is always preferable to have your family physician and/or your hematologistworking with you. So, in all likelihood, you will need to convince these people of your need for expert help.

CHAPTER

4ADVOCATING FOR

BETTER PAIN

MANAGEMENT


It is alwayspreferable to haveyour familyphysician and /oryour hematologistworking with you. So, in alllikelihood, youwill need toconvince thesepeople of yourneed for experthelp.

25

What are some effective communicationstrategies?

Take a buddy - Sometimes having a family member or a friend who knows yoursituation well accompany you to your clinic visit can help you to haveconfidence and to be more open about your situation. The person can even giveyou verbal reminders to raise your concerns.

Prepare ahead - Some people write their key points downbefore the visit. It can be easy to forget what you wantedto say in the heat of the moment. Also, some clinicsprefer that patients let them know ahead of time if theywish to have “discussion time”. The receptionist willbook a longer visit.

Be knowledgeable - Be ready to provide information about your pain—triggers,relievers, location, duration, severity and type—to the best of your ability. Use resources such as this booklet to know your options.

Be proactive - Ask to discuss your pain management. Propose a solution if youthink you have one.

Speak up! Be assertive! - State what the problem is and what concerns you have.It won’t help you to “grin and bear it”. Tell the staff what you need and why youneed it. If you don’t understand something or disagree with a treatment, say so!

Listen - Listen carefully to what the physician says. Don’t be afraid to ask him toexplain if you’re not sure you understand.

Stay calm - You may feel frustration and impatience because of the pain. Stayingcalm can be difficult but it is important. Your physician will find it easier tounderstand you.

Repeat yourself, if necessary - If you find your concerns are not getting addressed,calmly repeat your problem and insist that you are serious about finding asolution.

Be polite and courteous, yet firm - The healthcare professionals are trying to dotheir jobs to the best of their abilities. Remember that your physician is not apain expert and may have little experience treating chronic pain. What’s more,the medical profession frowns on certain forms of pain management.

Focus on the problem, not the people - You want relief from pain—that is theproblem at hand. Focus on finding a solution and not on any difficulties you arehaving getting help.

Use “I-statements”, not “you-statements” - It is more effective to focus on howyou feel and what you need… (“Doctor, I am having trouble functioning. Ireally need to find an answer.”) …than on any disputes with health careproviders. (“You’re not helping. You don’t take this seriously.”)

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CHAPTER

4ADVOCATING FOR

BETTER PAIN

MANAGEMENT

It is moreeffective tofocus on howyou feel andwhat you need.

26

What can you do to ensure your pain is taken into account?

It is hoped that assessment of pain will become as routine as checking othervital signs. Say that you want to discuss pain management when you schedulean appointment at the HTC. Also, let the members of the comprehensive careteam—nurse, physician, physiotherapist, social worker—know at the beginningof your appointment that you need to talk about pain management and youwant to be sure that there will be enough time. Be ready to describe the pain:the type, location, duration, activities that cause or relieve pain, strategies thathave/have not worked, the impact on school, work, your social life and yourmood. Even if you are not experiencing any pain at the time, you can help tomake it part of your routine check-up. Offer information about your pain justafter your blood pressure is measured. Remember: pain is the fifth vital sign.

Care for bleeding disorders in Canada has advanced over the past decades sothat many children and teens do not have chronic pain. Pain resulting fromacute bleeds can usually be well managed. But sometimes people who experiencepain on a regular basis tend to downplay the severity. This is especially true ofolder people with hemophilia who learned to hide pain so as not to worry familymembers and to avoid hospital visits. It is therefore not surprising that healthcare providers may not recognize its significance. While the ability to bear upunder pain is an extremely useful coping strategy, it has its limits and can get inthe way of finding the relief that is actually available.

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4ADVOCATING FOR

BETTER PAIN

MANAGEMENT


Say that you want todiscuss painmanagementwhen youschedule anappointment atthe HTC.

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28

CHAPTER

5


• What types of pain are experienced by hemophilia patients?• What are the treatment options for acute pain due to bleeds and/or surgery?• What are the treatment options for chronic pain?• What are the different medications?• What are the common side effects of all opioids?• What are the other concerns related to opioids?• Are opioids addictive?• What are adjuvant medications? Why are they useful?• What adjuvant medications can be used?• Pain levels change. What adjustments can be made for good days and bad days?• Does marijuana work for pain?• Are there things to remember when traveling?• Why are some doctors reluctant to give stronger pain medicine?


Effective Use of Opioid & Non-Opioid Analgesic

Peter Leung, M.D.Pain Management Service, St. Michael’s Hospital, Toronto

There are many useful medications for controlling pain. The type and route of administration must be tailored to the patient. Most importantly, the underlying problem must be managed by knowledgeable health care workers.

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CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC

What types of pain are experienced byhemophilia patients?

Pain is usually of two types:

• Acute pain - due to bleeding, surgery or trauma • Chronic pain - due to damaged tissues and/or altered brain and

spinal cord functions.

The pain of acute bleeds is due to the body’s perception of unpleasant stimuli onnerve endings. Ongoing chronic pain can be associated with either jointdegeneration or other hemophilia-related complications.

What are the treatment options for acutepain due to bleeds and/or surgery?

Most patients with acute pain can obtain relief with the careful use of commondrugs such as acetaminophen (Tylenol®) or non-steroidal anti-inflammatorydrugs (NSAID). The addition of opioids (see following list) can increase thecontrol of severe pain, depending on the individual patient.

If oral medication is ineffective, intravenous (IV) therapy is an option. Opioidscan be given by IV bolus, or by continuous administration for even more control.

One option is the use of patient-controlled analgesia (PCA). This is a form ofcomputer-assisted self-administration of IV opioid pain medication. It iscommonly called a “pump”. It can be used for acute bleeds or for post-operativepain control. The patient can press a button for delivery of doses, limited by thecomputer to a safe level.

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31

The drug doses can be adjusted on an individual basis and the patient plays arole in determining the effectiveness of treatment. A PCA can be used withchildren as young as seven years.

Once pain is controlled, the IV opioids can be stopped and the patient switchedto oral medication. Most hospitals provide PCA service and have informationpamphlets and even videos to help the patient learn to use the PCA effectively.

There may be a tendency to minimize the severity of acute pain and the benefitsto the patient of adequate acute pain relief. Some health care workersoverestimate the risk of the stronger pain medications, even in the post-operative period.

What are the treatment options forchronic pain?

The ideal chronic pain medication would be predictable, easy to use, fast acting,effective with no side effects and no risk of tolerance.

Medications may be given by mouth or IV. The duration of the pain relief isvariable. Physicians and patients must choose the individual drug wisely, as wellas the route and the timing of administration.

What are the different medications?

The following is a brief summary of some of the available options in hemophiliause and is not exhaustive or to be treated as recommendations.

Non-opioids

• Celecoxib (Celebrex®) Given by mouth• Acetaminophen (Tylenol®) Given by mouth

These are generally safe in normal doses for hemophilia patients.

CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC

Opioids

The following is provided only as a rough guide in hemophilia use.

Codeine• Available as a single dose or combined with acetaminophen and

caffeine (Tylenol®#1,2,3)• Can be prescribed in slow-release form (Codeine-contin®)• Usually given by mouth• Ceiling effect, that is, there is no increase in effect after the maximal

dose is reached • Inexpensive

Morphine • Can be prescribed in short-acting or slow-release forms (MS-contin®)• Can be given by mouth, subcutaneously (injected under the skin) or

intravenously• Special circumstances allow it to be given close to the spinal cord• Inexpensive

Oxycodone• Percocet ® or Oxycocet® (Combination with acetaminophen)• Can be prescribed in slow-release form (Oxy-contin)• Inexpensive

Hydromorphone• Dilaudid®• Can be given by mouth, subcutaneously or intravenously• Can be prescribed in slow-release form (Hydromorph-contin)

Fentanyl• Very potent• Very short acting• 3-day Patch (Duragesic®) or lollipop form for children• Expensive

Propoxyphene• Darvon®• Not frequently used

Pentazocine• Talwin®• Not frequently used• Caution: may have an opposite effect if added to other opioids


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CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC

What are the common side effects of all opioids?

• Nausea and vomiting• Sleepiness• Constipation• Itchiness• Tolerance• Depression

What are the other concerns related to opioids?

• Addiction• Abuse• Diversion (used by others or sold)

Are opioids addictive?

There are no guarantees in medicine. Physicians take all possible precautionsand still there will be patients who will use more than needed. On the otherhand, who is to say how much is needed except the patient himself? As long asthe amount used is for pain, then the chance of addiction is quite low. Short-term use for surgery or acute bleeds is very unlikely to lead to addiction.

Addiction is not the same as tolerance. When people use opioid painmedication, their bodies become accustomed to the dose. One may need toincrease the amount to get the desired effect. Changing to a differentmedication can sometimes avoid the increase.

Poorly treated pain is detrimental to patients. Poor pain management producesabnormal pain behaviour and may even cause patients to seek out street drugsbecause they are afraid of not being able to manage severe pain.

What are adjuvant medications? Why are they useful?

Adjuvant analgesics are a diverse group of drugs used to enhance pain control inspecific circumstances. They do sometimes reduce pain levels by themselves butoften are best used in combination with pain killers.

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CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC


34

What adjuvant medications can be used?

Anti-depressants

• Amitriptylline (Elavil®)• Nortrytilline (Aventyl®)• Fluoxetine (Prozac®)

Anti-convulsants

• Carbamazepine (Tegretol®)• Phenytoin (Dilantin®)• Valproic Acid (Depakote®)• Clonazepam (Rivotril®)• Gabapentin (Neurontin®)• Pregabalin

The rational use of pain medications can be based on the World Health Organization Analgesic Ladder.

Inadequate Relief

Inadequate Relief

Strong Opioid + Non-opioid

Adjuvant Agents+–

Weak Opioid + Non-opioid

Adjuvant Agents+–

Non-opioid Analgesics

Adjuvant Agents+–

World Health Organization Analgesic Ladder

CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC


Pain levels change. What adjustments canbe made for good days and bad days?

While slow-release forms are ideal for managing day-to-day pain levels, mostdoctors will allow a certain amount of shorter-acting breakthrough medicationsfor bad days and for acute bleeds. If the breakthrough medications are beingused too frequently, the doctor will re-assess the situation, look for a cause andadjust the medication.

Does marijuana work for pain?

Marijuana is probably better to reduce nausea, improve appetite and promotesleeping. Its use must be individualized. For most patients it is not the magicdrug. Legal access to marijuana is difficult.

Are there things to remember whentraveling?

When the patient is traveling, the doctor can provide a specific letter detailingthe medications and the amount needed. He/she may even set out a suggestedplan of medication for mild and severe bleeds. This will help the doctor inanother city manage the pain according to what the patient usually needs, andavoid too much or too little medication. It will also provide evidence at bordersthat a person is authorized to carry these medications.

Always keep the medication in the original bottle so that there is no doubt as tothe kind of medication being carried. Do not mix different pills (blue, yellow,big, small, round, cylindrical) into one bottle. This can cause confusion andmistakes.

CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC

35


36

Why are some doctors reluctant to givestronger pain medicine?

There are many different answers to this question. Some doctors do not havemuch experience treating pain. Others are concerned about the professionalconsequences. Unfortunately, one of the barriers to effective pain managementis that the governing body of doctors still frowns on the prescription of strongpain medicine, especially opioids.

There is also a lot of discussion as to whether doctors can ethically refuse toprescribe effective opioid medication for pain. If this happens, ask the doctor fora referral to a pain clinic. Or try to find another doctor who works well with thepatient to manage his pain. Good pain management does not always mean a lotof medicine.

In conclusion, it is important to remember that there are many usefulmedications for controlling pain. In all cases, the type of analgesic and the routeof administration must be tailored to the individual patient. What’s more, theunderlying health problem must be managed by knowledgeable health careworkers.

CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC


I Like to Call Pain the “Dragon”

Ian DeAbreu gave this testimonial at the CHS workshop on painmanagement held in Montreal on May 10, 2003.

My name is Ian DeAbreu I am 35 years old, co-infected, andhave severe hemophilia A. With regards to pain and bleeding, Ihave two target joints: the right elbow and left knee. These jointsare in poor condition and both have been candidates forreplacement for some five years now.

I’m active. I hold an automobile mechanic license. I havedesigned and built our cottage, and still insist on being involvedin all repairs and renovations around the house. I still enjoywood work.

It’s interesting that I should be asked to describe the pain Ilive with and how I manage it. I never considered myself one totake drugs to manage pain, at least not in the obvious sense liketaking Tylenol, because I rarely do this. While preparing for thistalk, it became clear that, consciously or not, I do have a strategyand do in fact take drugs to manage my pain. I infuse withclotting factor on a prophylactic basis to prevent bleeds andthereby prevent episodes of pain. I take Vioxx*, not everyday as Ishould, but when I start to feel constant nagging pain or knowthat I will be involved in activity the next day.

I experience pain daily. It can be mild or severe. It can berelentless. It can sometimes be unpredictable. I associate my painwith an imaginary companion I like to call the dragon. Thisdragon travels with me all day, every day. He makes it hispoint to remind me when I am doing somethingdestructive by breathing his heat and making meuncomfortable. As I like being active, I would hate tosee the trouble I might get into if I could silence thisdragon completely.

My pain has progressed significantly in the lastsix years. It has an impact on most aspects of mylife. My ability to climb stairs, walk distances(especially on uneven ground), type at thecomputer, hammer a nail and to open a jar, tomention only some examples, have all been affected.On days when the pain is extreme it can have anegative impact on my mood and (continued on next page)

*Editor’s note: Vioxx® (Rofecoxib), in the class of Cox-2 inhibitors, was removed from the world-wide marketby its manufacturer in September 2004 because of concerns over an increased risk of heart attack and stroke.As of publication, another Cox-2 inhibitor, Celebrex ® (Celecoxib) remains available.

P R O F I L E

I experience paindaily. It can bemild or severe. It can berelentless. It cansometimes be unpredictable. I associate mypain with animaginarycompanion I like to call the dragon.

37

in turn my mood can and sometimes does affect those around me. I have experienced no challenges in obtaining good pain

control because I have never focused on pain control. I havenever asked for a referral to a pain control specialist. Untilrecently I was unaware that such a specialist even existed. Itwould be interesting to see how I could slot yet another specialistinto my growing list of medical appointments.

Right or wrong, my perception is that visiting a pain controlspecialist will result in being advised to start consuming yetanother drug.

Living with hemophilia and being co-infected requires me tomake my daily activities revolve around the eight drugs I take.Any way you look at it these drugs, injected or ingested, have tobe processed by my body. Drugs in combination make a “chemicalsoup” of sorts leaving one to wonder about the possibility of druginteractions. With co-infection in mind, now consider that someof the eight drugs I consume are amongst the most toxic, beingprocessed by a liver struggling with HCV. I find myself thinkingdaily about what I take in and whether or not it may result infurther liver injury.

Beyond issues of interactions and co-infections, I am alsoconcerned that the severity of my pain would require a verystrong pain killer. Something strong enough to negate my paincould result in a dulling of the senses and impairment orreduction in my overall ability to function. I live in a smallcommunity where there is no public transit and driving anautomobile is a necessity, not an option. Besides that, I don’t likeliving in a cloud.

It’s not to say that managing pain by taking pain killers can’twork for someone, but it’s still a matter of choice. I believe youhave to be comfortable with the idea, and it has to be a good fitwith your personal situation.


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CHAPTER

5EFFECTIVE USE

OF OPIOID

& NON-OPIOID

ANALGESIC

Jenny Aikenhead Physiotherapist, Alberta Children’s Hospital, Calgary, Alberta

“The Pain Service at the Hospital for Sick Children always recommends appropriate exercise to our patients. We know that exercise makes the body release chemicals, called endorphins, that not only make us feel less pain but also make us feel good. It’s something you can control and do for yourself.” - Dr. Michael Jeavons, Psychiatrist, Hospital for Sick Children’s Pain Service


Physiotherapy – Another Approach to Pain Management

CHAPTER

6


• What is acute and chronic pain?• Why is an exercise or fitness program an essential part of your pain

control regime?• What should you do before starting on an exercise or fitness program?• What else besides exercise has physiotherapy to offer you for pain relief?• What activities can you participate in when you have arthritis?• When physiotherapy, exercise or fitness programs no longer offer pain relief,

what are your options?

39


40

What is acute and chronic pain?

Acute pain…

• is usually the result of an acute bleed or injury and then requiresreplacement factor.

• responds well to R.&R.I.C.E. (Replacement therapy & Rest, Ice,Compression, Elevation).

• can benefit from rest from activity, use of a splint, sling, walking aid orwheelchair.

• can benefit from ice to decrease swelling and muscle spasm.

Chronic pain…

• results from recurrent inflammation of a joint that causes destructivechanges to the synovium (lining), cartilage and bone.

• affects different people to different degrees. This depends on manyfactors: the individual himself, his expectations, the situation, hiscultural background, the intensity of the stimulus, stress, fatigue andthe duration of the pain.

Why is an exercise or fitness program an essential part of your pain controlregime?

It improves…

Muscle strengthStronger muscles tire less easily, which results in extra support and protectionfor the joint and reduces the stress and strain that can cause pain.

Joint range of motionImproved mobility of the joint will result in better alignment of the joint anddecreased stress on its surrounding structures. Exercises will help reduce stiffnessand by improving movement may alleviate pain.

FlexibilityJoint contractures and/or muscle shortening may result in pain and respond wellto stretching exercises. Improved flexibility will also decrease the chance ofmuscle bleeds.

Coordination and balanceThe development of these skills results in a quicker response to a suddenmovement and a decreased chance of further injury to the joint.

CHAPTER

6PHYSIOTHERAPY –

ANOTHER APPROACH

TO PAIN

MANAGEMENT

41


Confidence and peer acceptanceExercising allows sharing with friends. Improved ability to participate, andsuccess, will improve confidence.

Feeling of well being and decreased anxietyMental stress and anxiety is known to influence sleep patterns, muscle spasm,the frequency of bleeds and increase the sensitivity to pain. Exercise candecrease feelings of stress.

Release of endorphins which decrease painEndorphins are natural chemicals produced by the body and act as a damper tothe sensation of pain. The production of endorphins is thought to be influencedby exercise, heat, cold, positive attitude, some physiotherapy electricalmodalities, relaxation and medications.

Endurance and possible weight lossCardio-vascular exercises will increase endurance and strength and thereforereduce stress on the joints. Weight loss may occur which also decreases pressureon the joint surface.

What should you do before starting onan exercise or fitness program?

Consult with a physiotherapist at the HTC who will…

Assess the painIt is important to have a physiotherapist assess the history of the past andpresent pain, and the nature and intensity of the pain so as to find out itsprobable cause. Is it caused by an acute joint bleed? A soft tissue strain/bleed?Synovitis? Chronic synovitis? Arthritic pain?

Provide an exercise programA specific exercise program can be developed to address the root of the pain; forexample, weakness causing instability. The physiotherapist can give guidelinesfor the progression of exercises and recommend a suitable fitness program in thecommunity. Often exercise programs are not continued because of changes inthe intensity or type of pain and worsening of the arthritis. It is thereforeimportant to keep your physiotherapist informed of the changes in or worseningof pain so that exercises can be adapted or modified to meet new criteria. It maybe necessary to use replacement factor prior to exercise activity. This may berequired each time or may only be necessary initially. Splints or supports may berequired to protect the joint during exercise.

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42

Assist choosing an exercise or activity programIt is essential to look at the chosen activity to see if it can benefit youindividually. It may be necessary to provide an exercise program to develop theskills needed to participate, or adapt part of the program to suit you better.Weight training programs should be carefully reviewed to avoid injury. Progressshould be gradual. These programs are not usually recommended for childrenunder 14 years of age because lifting excess weight may affect the developmentof growth plates. Weight training can be done by children provided thatmaximum weights are not lifted. Weight machines are preferred to bodybuilding and free weights because there is less likelihood of injury.

What else besides exercise has physio-therapy to offer you for pain relief?

Non Electrical Treatments

• Hot packs or heating pads – Apply for 15 to 20 minutes for maximumeffect.

• Ice – Apply for 5 to 10 minutes to decrease pain and muscle spasm byslowing down the rate that the nerves can conduct the pain signals.

• Whirlpool, hydrotherapy, swimming and aquacize – Exercise, especiallyin warm water, will decrease pain and muscle spasm as well as providean excellent medium for strengthening exercises without causing stresson the joints.

• Splinting or supports – These may help to decrease the pain byresting the joint. They can also be used to support the joint whileparticipating in an activity or exercise program.

• Mobilizations or tractions – These techniques may reduce pain byincreasing movement. They should be performed by a physiotherapistwho is familiar with hemophilia. High-velocity manipulations such asthose performed by chiropractors, osteopaths or some physiotherapistsare not recommended for anyone with a bleeding disorder.

• Massage – Massage can be used for stress relief. It induce relaxationand decreases muscle spasm. Deep tissue massage and soft tissue releaseis not recommended.

• Shoe inserts or foot orthotics – Shock absorber and supportive shoeinsoles can reduce pain by cushioning the pressure on the foot and byaccommodating foot deformities.

• Crutches, cane or wheelchair – These may reduce the stress and pain onthe ankle, knee or hip.

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MANAGEMENT

43


• Acupuncture – Acupuncture is not contraindicated in hemophilia,although it is recommended that replacement therapy be used prior tothe first treatment. Chronic pain and muscle spasm respond well tothis type of treatment.

Electrical Modalities

These are used only as an adjunct to an exercise treatment.

• Transcutaneous Electrical Nerve Stimulation (T.E.N.S.) – This is alow frequency electrical current that is used to reduce acute andchronic pain. The electrical stimulus is thought to block the painsensation caused by the nerve fibres. The electrical current is deliveredby a small portable unit using two to four electrodes and can be usedat home or work several times a day.

• Codetrin – This is another form of T.E.N.S. using several sets ofelectrodes. Each pair of electrodes is set to fire in random pattern toconfuse the pain message.

• Interferential therapy – A low frequency electrical current used toreduce pain or swelling depending on the type of current used.

• Muscle stimulation – This technique involves an electrical stimulusthat causes contraction of a muscle. It should be used as an adjunct toexercise to assist with retraining a weak muscle. The pain in the jointmay be decreased by increasing the muscle strength and support of thejoint.

• Electrical biofeedback – Biofeedback can be used in retraining a muscleto contract by using visual or auditory cueing or to teach a muscle torelax and result in a decrease in muscle spasm.

• Ultra-sound – This is a high frequency current used to decreaseswelling and promote absorption of a hematoma and is usually used inacute pain.

• Acustim – This is a low frequency electrical stimulation used overacupressure points to try to reduce pain caused by muscle spasm.

• Pulsed short wave diathermy – Used more commonly in Europe, this isa form of electromagnetic energy which helps reduce swelling, painand promote tissue healing.

• Laser therapy – This has been used in arthritis to reduce pain andincrease healing but has limited use in hemophilia.

Some of the equipment needed for the therapies above is available in thehospital where the HTC is located. In addition, some patients rent certainpieces of equipment.

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What activities can you participate inwhen you have arthritis?Recommended activities are those that are low impact on the joint butallow mobility, strengthening and cardio-vascular exercise andthat will not cause bleeding or aggravate the synovitis (theinflammation of the lining of the joint).

Swimming and aquacizeThese are highly recommended becausethe buoyancy of the water allows exercising without stress onthe joints. They can also allow you to take part in strengthening exercises byusing weights or floats. Warm water will provide the extra benefit of relief ofpain and stiffness.

T’ai ChiThis is an excellent exercise program that allows slowcontrolled movement and gentle stretching of thejoints along with coordination and trunk (corestability) exercises.

YogaThis is also a stretching and strengthening exercise butbe careful that the classes are appropriate for someonewith arthritis and not too advanced for your fitnesslevel and ability.

BicyclingThis can be started on a stationary bicycle and laterprogress to a road bike. The height of the bike seat canbe adjusted to accommodate joint range. Risers can beput on pedals for leg length discrepancies. Rememberyour BIKE HELMET and PROTECTIVE PADS.

Walking, dancing, bowling and hikingThese are low impact activities on the joint.

For more information, see Passport to Well-being:Destination: Fitness.

When physiotherapy, exercise or fitnessprograms no longer offer pain relief,what are your options?See Orthopedic and Surgical Management of Pain on page 47.

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Not All Kids My Age Are in the Same Boat

Sean Creighton wrote this article about his experiences in dealing with painfor the Spring 2004 issue of the CHS newsletter VOYAGE.

Hello, my name is Sean Creighton. Throughout my life, I havehad to deal with pain. Not all kids my age are in the same boat.My pain ranges quite a bit, from arthritic pain to the pain ofbleeds caused by hemophilia. Through it all, I have had theconstant support of my fellow triplet brothers, who both havehemophilia, my older brother and younger sister and my motherand father.

My parents are undefinable! They even surpass the idea ofunconditional love and they are in a league of their own. When Iwas only a couple of months old, I was diagnosed withhemophilia. This was a very large blow to my parents becausethere was no history of hemophilia in our family. My tripletbrothers have it too, so it was a big adjustment for Mom and Dad.

When I was 7 years old I developed arthritis in my anklefrom constant bleeds in that site. I hurt my ankle a few times andthen it began to hurt a lot and very often. Then my life wasnormal for a while. Vioxx*, Tylenol, ice, compression, rest, andan ankle brace became my weapons to battle the pain. I learnednew exercises and even learned when to take it a little easier.Then last year I underwent something called a pain cycle. Whatthis is, is when I hurt my elbow it started to get worse and worseuntil I was hospitalized for the weekend. My elbow had a littleswelling and fluid in it, but the pain was horrible. My nerveendings caused really bad pain, to movement and touch. Paincycles aren’t that common, but neither are triplets withhemophilia. I have gone through a couple of paincycles since and I missed a lot of school lastyear, but there is good news!!!

I do a lot of physiotherapy to avoidthe pain cycles from happening. I havehad some serious bleeds and I havenot gone through this pain, so Iknow the exercises are helping. Iwas very worried about how often (continued on next page)

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*Editor’s note: Vioxx® (Rofecoxib), in the class of Cox-2 inhibitors, was removed from the world-wide market by its manufacturer inSeptember 2004 because of concerns over an increased risk of heart attack and stroke. As of publication, another Cox-2 inhibitor,Celebrex ® (Celecoxib) remains available. 45

this would keep happening to me. I learned to take little steps toget through the pain. I learned to go to school for 1 hour or halfa day, to exercise and rest, to try different types of medicationsand to know when to use what and when to not use anything.I’ve also learned to fight the pain and to not let it wreckeverything for me. Nobody ever likes pain that is for sure, butpain is a part of life and that is the way I deal with it. Next timeyou have a bleed or severe pain don’t think to yourself, “Oh woeis me.” Think, “This is one moment in my life. There will be moreups than downs so chalk one up for a down in life and move on.”

I get mad sometimes, especially on the days when I wonderwhy my brothers don’t have the same things happen to them?That’s when I most need my Mom and Dad. My Mom has takenme to every doctor’s appointment and stayed with me whenever Iwas admitted. Not to sound corny or anything but she is my rock.She has listened and she has a heart of gold as far as I amconcerned. My father is also very important to me because he hasalso cared for me and can show true love in times of need. Not allkids know their parents this way. We are very close. Now, so thatno one thinks my life is horrible, never judge a book by its cover.My life is quite active. I have been on volleyball teams andbasketball teams at school and I am going to try to play with asoccer team this summer. My knee may not like this, but I needto try, because I didn’t play last year. When I have pain, I justcan’t wait until it goes away and I can be me again. I know thiswill happen so I keep looking forward to getting better and doingthe things I can to make that happen.


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• How do acute bleeds lead to joint damage?• Can recurrent bleeds be prevented?• How is the synovium removed?• When does a joint need to be replaced?• What is involved with joint replacement surgery?• What can I expect after joint replacement?

How long do the new joints last?• What are the risks associated with joint replacement?• What other surgeries are available to help manage pain?• Are there less invasive options for managing pain

from chronic joint damage?

CHAPTER

7Orthopedic and SurgicalManagement of Pain

D. William C. Johnston, BMedSC, M.D., FRCS(C)Orthopedic Surgeon and Site Medical Director of the University of Alberta Hospital

Nancy Dower, M.D.Hematologist, Walter Mackenzie Health Sciences Centre, Edmonton, Alberta

Orthopedic interventions can be very effective inmanaging pain. Acute pain from recurrent bleeding into target joints can be helped by procedures such assynovectomy. Chronic pain from an irrevocably damagedjoint can be relieved by procedures such as jointreplacement. All invasive procedures must be performedunder the protection of factor replacement. Thehemophilia doctor must be involved to ensure thatadequate levels of replacement are provided for theappropriate time post-operatively. Factor replacementmay be recommended prior to post-operativephysiotherapy sessions.

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How do acute bleeds lead to jointdamage?

Bleeding into a joint causes the lining of the joint (synovium) to be inflamed.Swollen strands of the synovium may extend into the joint between the boneswhere they can be pinched, resulting in further bleeding. Blood within the jointgradually destroys the smooth gliding cartilage surface of the bone resulting inpain and decreased range of motion.

Can recurrent bleeds be prevented?

Use of prophylactic factor replacement has been very effective at decreasingjoint bleeds and delaying the onset of chronic joint damage.

Removal of the swollen synovium (synovectomy) can decrease recurrentbleeding into a target joint.

How is the synovium removed?

Three techniques can be used to remove swollen synovium:

Radioactive synovectomy: A radioactive isotope, such as 32P or 90Yttrium isinjected into a target joint, usually under flouroscopic guidance in the radiologydepartment. Within the joint, the radioactivity reduces the amount of swollensynovium. This technique has not been shown to increase the risk of developingcancer although this is a theoretical risk. Arthroscopic synovectomy: Using small surgical incisions a tiny camera isinserted into a joint to guide the removal of the synovium through the otherincisions. This is usually done under general anesthetic and can be used forankles, knees and elbows. Physiotherapy may be necessary post-arthroscopy for 2 to 4 weeks.Open synovectomy: Under a general anesthetic, the joint is opened surgicallyand the synovium removed. Physiotherapy will be necessary for at least 4 weeks.

When does a joint need to be replaced?

Chronic joint damage produces pain and decreased range of motion. When thepain is severe and interferes with the activities of daily living, joint replacementis an option. Knee and hip replacements are the most common. Elbow, shoulderand ankle replacements are done less commonly due to the complexity of thejoints. Newer techniques and materials are expanding indications.

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What is involved with joint replacementsurgery?

The damaged joint and adjacent bone are removed and replaced with plasticand metal components (knee) or with a metal ball and a plastic cup (hip).

Factor replacement is extremely important, as this can be a bloody surgery evenin non-hemophiliac patients. Clotting factor levels are kept at 100% usually bycontinuous intravenous infusion for 10 days or more. Specific management mustbe done by the hemophilia doctor.

“Despite having a high-titer inhibitor, my physicians recommended knee replacements.The operations went smoothly and my life has been transformed. I can walk again.”– a 55-year-old person with hemophilia and an inhibitor

Pain control is critical during the recovery period so that early mobilization and physiotherapy can occur. Most patients are walking within 2 days (hip andknee) and are discharged within 10-14 days. Improvement continues for up to 6 months.

What can I expect after joint replace-ment? How long do the new joints last?

Most people are left with a pain-free joint. Range of motion usually is betterwith hip than with knee replacement.

Ninety percent of hip and knee replacements should last 10 years. Replacementof the artificial joint is sometimes necessary as the artificial joint can wear out orbecome loose. The success rate is usually not as good as for first timereplacements.

What are the risks associated with jointreplacement?

There are very low risks associated with general anesthetic. Your anesthetist canbest assess these.

Intra-operative and post-operative bleeding should be limited by factorreplacement. Transfusion with blood products may be necessary. Most hospitalsperforming joint replacements have autologous blood donation programs forpatients to store their own blood preoperatively in case a transfusion is needed.Alternatively, blood products from anonymous donors can be used.

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Infection may complicate surgery. This may be superficial or in the deep tissueand bone. Infection may occur early or develop weeks or months after surgery.Infection requires antibiotic therapy usually by intravenous route and in-hospital. An infection may not clear up until the artificial joint is removed.

The new joint may dislocate. The components may become loose. If the jointfails, the surgeon may need to perform further surgery.

What other surgeries are available tohelp manage pain?

Other surgeries might be considered to manage pain from damaged joints. These are:

• Removal of small bony growths around the joint margins(cheilectomy).

• Fusion of the joint to leave a painless immobile joint (arthrodesis).• Removal of the radial head to improve rotation of the forearm.• Removal of the ball part of the femur to allow a fibrous union to

develop. This may be done if a hip replacement fails (GirdlestonesProcedure).

• Removal of a wedge of bone from the femur or tibia to realign the legand reduce pain (osteotomy).

Are there less invasive options formanaging pain from chronic jointdamage?

Injection of a corticosteroid, e.g. methylprednisolone, into an affected joint canbe used in the short to medium term to decrease inflammation and resultantpain. This could be used while awaiting surgery.

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Five Joint Replacements/Fusions… And I Still Have a Slice

Michel Lalonde gave this testimonial at the CHS workshop onpain management held in Montreal on May 10, 2003.

I am a 49-year-old with severe hemophilia A (factor VIIIdeficiency).

I have had a total of five joint replacements/fusions since 1975:• a total right knee replacement in 1975• a right ankle fusion in 1986• a left ankle fusion in 1988• a total left knee replacement in 1990• a right elbow replacement in 1999.

I had quite numerous bleeding episodes at a young age andthroughout my teenage years which caused great stress on thejoints and much pain. This affected my school and social life. Forexample, a bleeding episode in the knee could occur within a fewhours without physical stress on the joint itself. Before the elbowreplacement in 1999, I was in tremendous pain continuously fora period of about 8 months to the point of having to stop working.

To manage the pain caused by bleeding in the joints, thedevelopment of factor VIII concentrate has been comparable tothe invention of the wheel or the microwave. It could controlthe bleeding, which would most of the time control the pain. In turn, this improved my quality of life. In the most serious cases, however, only strongmedicines such as morphine could alleviate thepain and then, not always. Ultimately, theoperations (replacement/fusion) were godsendsand did relieve the pain.

Dr. Denis Desjardins, an orthopedicsurgeon, and the medical team from the OttawaCampus of the General Hospital havecontributed greatly to improving my physicalquality of life. Even when factor VIII wascontrolling the bleeding episodes, the pain (continued on next page)

P R O F I L E

My wife and I play golf (I still have a slice) and I am able to enjoy some traveland visit familyand friends.

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sometimes did not subside. Surgery was then the only alternativeto eliminating the pain in my case.

On a personal note, I have a very supportive wife, awonderful family and friends. I retired three years ago after 19years as a nursing orderly in a rehabilitation institute in Ottawa.I really enjoyed my work.

I do not run or skate and I avoid stairs like the plague. Mywife and I play golf (I still have a slice) and I am able to enjoysome travel and visit family and friends.

Overall, I believe my life is good!

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Pain Management for Women with Bleeding DisordersChristine Demers, M.D., Hematologist, FRCPC, Quebec City, Quebec

Christine Derzko, M.D., Obstetrician-Gynecologist, FRCSC, Toronto, Ontario

Joanne Douglas, M.D., Anesthesiologist, FRCPC, Vancouver, British Columbia

Rochelle Winikoff, M.D., Hematologist, FRCPC, Montreal, Quebec

The ideal management of pain in women with inheritedbleeding disorders is through multidisciplinary clinics.Multidisciplinary clinics caring for women with bleedingdisorders should include at least a nurse, a clinicalhematologist, an obstetrician-gynecologist and ananesthesiologist.

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• What are the bleeding disorders that can affect women?• What types of pain may be experienced by women with bleeding disorders?• What are the treatment options for managing pain during menstruation and

ovulation?• What are the recommendations for managing pain during childbirth?• What is the best way to manage pain in women with bleeding disorders?• Who are the members of the multidisciplinary team involved in managing pain

in women with bleeding disorders?

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What are the bleeding disorders that canaffect women?

Of the inherited bleeding disorders, von Willebrand Disease is the most frequentdisorder in women, followed by mild coagulation factor deficiencies such asfactor XI deficiency and mild platelet disorders. Female carriers of hemophiliamay also be symptomatic.

Symptoms related to inherited bleeding disorders are quite variable dependingon the type and the severity of the condition. For the same degree of diseaseseverity, women are often more symptomatic than men due to excessivemenstrual bleeding and peripartum hemorrhage.

What types of pain may be experiencedby women with bleeding disorders?

As in the general population, women with bleeding disorders can experienceboth obstetrical and gynecological pain, yet because of their underlying bleedingdisorder, the pain may be both more severe than in other women and also mayrequire particular approaches to management. During the menstrual cycle,women may experience pain both during menstruation and during ovulation. In women with bleeding disorders the pain at ovulation, known as midcycle painsyndrome, may be more severe than usual, as the release of the egg from theovary may be accompanied by internal bleeding from the ovulation site itself.

The menorrhagia which is common in women with inherited bleeding disorderssignificantly diminishes the quality of life of these women. Between 40 and50% of women who experience menorrhagia report that they are limited intheir activities and that they find working more difficult during their menstrualperiods. If these women also experience severe pain during their menstruation,it is likely that their quality of life will be even worse.

Specific obstetrical challenges also exist. Women with bleeding disordersexperience pain both during and after delivery as do other women; however, the management of pain during labor and delivery is more challenging in thesewomen than in women without bleeding disorders. There is a greater likelihoodof excess bleeding not only associated with the delivery itself, but also as a resultof the placement of the regional anesthesia used to provide pain relief.


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FOR WOMEN

WITH BLEEDING

DISORDERS

…women areoften moresymptomaticthan men dueto excessivemenstrualbleeding andperipartumhemorrhage.

What are the treatment options formanaging pain during menstruation and ovulation?

Women with inherited bleeding disorders experiencing menorrhagia oftenrequire treatment in order to reduce and shorten the duration of their menstrualblood flow. Some of the treatments for menorrhagia are also effective in themanagement of menstrual pain or pain related to ovulation. Not only arecombined oral contraceptives a very effective and safe therapy for menorrhagiaand, therefore, the first line therapy for the management of menorrhagia inwomen with bleeding disorders, they are also very effective for the control ofmenstrual pain as well as for the suppression of ovulation for severe midcyclepain syndrome.

Non-steroidal anti-inflammatory drugs, while very effective in the managementof menstrual pain in the general population, are seldom used in patients withinherited bleeding disorders because of their potential for aggravating menstrualbleeding. The exception to this may be the COX-2 inhibitors which arereported to not cause platelet dysfunction and thus may be useful to treatmenorrhagia in women with inherited bleeding disorders. The safety of anumber of these preparations, however, has recently been called into question.

What are the recommendations formanaging pain during childbirth?

Pregnancy is not contraindicated in patients with coagulation disordersbut it does require multidisciplinary management. Ideally, there shouldbe a pre-pregnancy discussion regarding the optimal approach todelivery between the future parents and the medical team.

An inherited bleeding disorder is not an indication for induction ordelivery by cesarean section; the decision to induce or to proceed with acesarean section should be based on obstetrical indications.

The use of regional anesthesia (epidural and spinal) in the presence of acoagulation defect is of concern because, if a vessel in the spinal canal werepunctured, a hematoma might occur, which in turn could cause severe andpermanent neurological damage. Most experts accept that there is nocontraindication to regional anesthesia if coagulation is normalized in a womanwith a hereditary bleeding disorder. Factor levels performed late during thethird trimester are useful to make a decision regarding the safety of regionalanesthesia; however, there is no consensus on this issue and the decision shouldbe individualized after discussion with the patient before delivery and clearlyindicated in the chart.


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If an epidural is contraindicated, intravenous analgesics may be used althoughthey will not completely eliminate pain. Another option for peripartumanalgesia is the use of nitrous oxide mixed with oxygen, which is inhaled by themother.

Regional anesthesia for cesarean section is absolutely contraindicated if there isevidence of a coagulopathy. If the coagulation status is borderline, the relativerisks and benefits of general anesthesia and spinal anesthesia must be consideredand discussed with the woman.

Non-steroidal anti-inflammatory drugs are used routinely in the generalpopulation to relieve pain and discomfort following delivery; however, as notedabove, in general, in patients with inherited bleeding disorders, the use of non-steroidal anti-inflammatory drugs is avoided because of the possible additiveeffect on excess bleeding. Acetaminophen with or without codeine is thepostpartum analgesic of choice for this group of women.

What is the best way to manage pain inwomen with bleeding disorders?

The ideal management of pain in women with inherited bleeding disorders isthrough multidisciplinary clinics. At the present time, there are only a few suchclinics that exist in tertiary care centres.

Women with severe bleeding disorders (or with a fetus at risk of a severebleeding disorder) should deliver in a hospital where there is access toappropriate blood products, consultants in obstetrics, anesthesiology, hematologyand pediatrics. Recommendations for the delivery concerning the managementof pain and bleeding should be discussed with the patient and written in thechart by the health care team. The risks and benefits of various forms ofanalgesia merit a multidisciplinary discussion and decisions should be made onan individual basis.

Who are the members of the multi-disciplinary team involved in managingpain in women with bleeding disorders?

Multidisciplinary clinics caring for women with bleeding disorders shouldinclude at least a nurse, a clinical hematologist, an obstetrician-gynecologist andan anesthesiologist. They should ideally have a broader representation ofexpertise and include a family physician, a social worker, a pharmacist, alaboratory technician and a secretary.


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with BleedingDisorders

The risks andbenefits ofvarious formsof analgesiamerit a multi-disciplinarydiscussion anddecisionsshould bemade on anindividualbasis.


One Woman’s Experience

I am a 41-year-old woman with Type III (severe) vonWillebrand Disease.

I’ve had bleeding into joints, but this is far less common forme than bleeding into muscles. When I was a child, my mom or Iwould wrap the affected area with an elastic bandage and elevateit. I don’t recall having any pain medication. These days, I rely onice and Tylenol, as well as treating with Humate P at times – butif the pain is minimal I try to go without an infusion. What Iusually feel is a hard-to-describe mixture of pressure and painranging from intense aching to sharp jabs (when the limb isjarred, for example), and a frustrating sense of weakness.

Not surprisingly, giving birth ranks as one of my mostseverely painful experiences. One might not expect this to be a“bleeding disorders issue”, but it is. The most effective methodsfor controlling, minimizing or eliminating the pain of childbirthwere not available to me because they could cause bleeds. My factor levels don’t rise during pregnancy, and I had verylimited options for pain relief. An epidural was out of thequestion. So was an injection into muscle. While I trulyappreciate all the support I received at the time, I couldn’t helpbut be anxious, knowing that I would be in pain and not knowinghow my body would react in terms of bleeding.

As it turned out, the pain of labour became so extreme that Ifound myself panicking, trying to escape. I was allowed to inhalegas and was given morphine intravenously. These did help meto cope better, if only by enabling me to relax slightlybetween contractions, but they didn’t take away the pain.

My other most extreme experience of pain was causedby an ovarian bleed. Every movement – even the slightjarring of sitting as a passenger in a car – wasexcruciating. By the time I got myself to a doctor’soffice, an enormous amount of blood had collected inmy abdominal cavity. When the doctor pressed on myabdomen and let go, the pain was blinding. I almostshot through the ceiling. Stopping that bleed andreabsorbing the pooled blood took a long time. Iwas hurting, depressed and exhausted. I’ve hadthree similar bleeds. Now I take the Pill, avoidingovulation to prevent another bleed. (continued on next page)

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Sometimeshaving a senseof controlprovides ameasure ofpain relief in itself.

Another long trial was precipitated by the removal of a benign lump in my breast. The pain caused by the resulting bleedwas not as intense, but the treatment included repeated miningfor collected blood in my breast, using a big needle and syringe –which did hurt. However, I think you get somewhat inured topain. After the incision in my breast reopened, I chose to have itrestitched without the benefit of freezing, figuring the stitchingneedle would be less painful than the anaesthesia one. It was fine.

Sometimes having a sense of control provides a measure ofpain relief in itself.


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CHAPTER

9Complementary and Alternative Approaches to Pain ManagementSophia Gocan, R.N. Member, CHS National Program Committee, Ottawa, Ontario

When people suffer from pain, they often consider the use of non-traditional medical approaches. This chapter provides an introduction to this topic.


• What are complementary and alternative approaches to pain management?• What are some commonly used complementary and alternative therapies?• Are complemetary and alternative health care helpful in reducing pain?• Are complementary and alternative therapies safe?• Can I use complementary therapies as well as conventional medicine techniques?• Where can I learn more about complementary and alternative health care?

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What are complementary and alternativeapproaches to pain management?

Complementary and Alternative Medicine (CAM) are therapies that areconsidered outside of mainstream medical practices. The National Center forComplementary and Alternative Medicine (NCCAM) is a component of theUnited States National Institutes of Health. NCCAM describes CAM as: agroup of diverse medical and health care systems, practices, and products that are notpresently considered to be part of conventional medicine. In Canada, CAM practicesare referred to as Complementary and Alternative Health Care (CAHC).

Complementary therapies are used together with conventional medicine. An example of a complementary therapy is using aromatherapy tohelp lessen a person’s discomfort following surgery. Incontrast, alternative medicine is used in place ofconventional medicine. An example of an alternativetherapy is using a special diet to treat cancer insteadof undergoing surgery that has been recommended bya conventional doctor.

While there is scientific evidence supporting someCAHC therapies, for most there are key questionsyet to be answered through well-designed scientificstudies—questions regarding the safety andeffectiveness for the diseases or medical conditions forwhich various therapies are used.

The list of therapies considered to be CAHC changes continually, as thosetherapies that are proven to be safe and effective become adopted intoconventional health care and as new approaches to health care emerge.

What are some commonly used comple-mentary and alternative therapies?

NCCAM classifies CAM therapies into five categories, or domains:

Alternative medical systems

Alternative medical systems are built upon complete systems of theory andpractice. Often, these systems have evolved apart from and earlier than theconventional medical approach used in North America. Examples of alternativemedical systems that have developed in Western cultures include homeopathicmedicine and naturopathic medicine. Examples of systems that have developedin non-Western cultures include traditional Chinese medicine and Ayurveda.

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Mind-body interventions

Mind-body medicine uses a variety of techniques designed to enhance themind’s capacity to affect bodily function and symptoms. Some techniques thatwere considered CAM in the past have become mainstream (for example,patient support groups). Other mind-body techniques are still considered CAM,including meditation, prayer, biofeedback, humour therapy, and therapies thatuse creative outlets such as art, music, or dance.

Biologically based therapies

Biologically based therapies in CAM use substances found in nature, such asherbs, foods, and vitamins. Some examples include oxygen therapy, dietarysupplements, herbal products, and the use of other so-called “natural” but as yetscientifically unproven therapies (for example, using shark cartilage to treatcancer).

Manipulative and body-based methods

Manipulative and body-based methods in CAM are based on manipulationand/or movement of one or more parts of the body. Some examples includechiropractic or osteopathic manipulation, reflexology, and massage.

Energy therapies

Energy therapies involve the use of energy fields. They are of two types: bio-field therapies are intended to affect energy fields that allegedly surroundand penetrate the human body. The existence of such fields has not yet beenscientifically proven. Some forms of energy therapy manipulate biofields byapplying pressure and/or manipulating the body by placing the hands in, orthrough, these fields. Examples include qi gong, Reiki, and Therapeutic Touch.Bioelectromagnectic-based therapies involve the unconventional use ofelectromagnetic fields, such as pulsed fields, and magnetic fields.

Are complemetary and alternative healthcare therapies helpful in reducing pain?

The growing popularity and increased demand for CAHC is evident. Manyconsumers report using CAHC in order to maintain current health andwellness, or to promote their health further and prevent future illness.Remember, however, that these are not scientifically proven treatments.

It is important to ask yourself what you expect from CAHC therapies. Whileyou may not be able to find relief for your pain, some CAHC therapies may beable to provide you with indirect benefits.

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Consider the potential benefits before starting a treatment. Monitor how youfeel as a result of the treatment. Then make a decision about whether tocontinue it.

A few of the benefits that different therapies may be able to exert include:• Improved management of stress-related symptoms• Easing your perception of pain• Increased mobility• Decreased anxiety• Reduced tension• Improved posture and flexibility• Improved appetite or weight gain• Restoring a sense of “balance” in your body• Improved sleep• Enhancing your sense of well-being• Assisting you in experiencing inner calm and peacefulness• Assisting you in obtaining better insight into your personal healing.

Or even more specifically:• Improving blood circulation• Decreasing swelling• Increasing range of motion in joints.

The results that people experience, however, are highly individual, and not allCAHC therapies are equally suitable or credible. Before you try anything, learnas much as you can about the therapies you are interested in, then discuss themwith your doctor.

Are complementary and alternativetherapies safe?Any information that you obtain regarding the safety and effectiveness of aCAHC therapy is not intended to substitute for the medical expertise and adviceof your primary health care provider. Be sure to discuss all of your CAHCpractices with your physician and other health care providers. Your health careteam is an important part of helping you decide if a treatment may be appropriateand safe for you. Do not be afraid to ask their advice if you have a question. It isvery important that you maintain open communication with your health careteam. By working with your doctor and health care team, you can access reliableadvice and your team can provide you with supervision of your progress.

To protect yourself from potential risks involved when using CAHC therapies,be sure to:

Seek out only fully competent and licensed practitioners. Some providers arelicensed by professional licensing bodies. Do not hesitate to ask individuals

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about their training and experience. Your provincial or territorial Ministry ofHealth can provide information on the training and supervision of CAHCtherapy providers. There is a core group of professions (medicine, dentistry,registered nursing, optometry, and pharmacy) which are regulated in all of theCanadian jurisdictions, but for the balance of the professions there aresignificant differences across Canada as to whether a particular profession isformally regulated. Mainstream professional regulatory bodies or professionalassociations may have policies or regulations regarding the practice ofalternative therapies by their members. The scope, depth, and duration ofeducation and training for complementary and alternative practitioners varyaccording to the area of practice. Try to gather information from sources thatlook at both sides of a therapy—those who oppose and those who support thetherapy. This will give you a balanced view of the therapy you are considering.

It is important that the choices you make are informed. Be cautious about any ofthe claims that you come across. Reliable information may be hard to find.Examine the scientific information that is available to back the effectiveness ofa therapy before making health care decisions. Some CAHC products containpowerful pharmacological substances which can be toxic on their own, or whenused with other medications. Some can affect the ability of your blood to clot.This is especially dangerous for a person with a bleeding disorder. Somesubstances known to negatively affect clotting are…

• black cohosh• cat’s claw• feverfew• garlic• ginkgo biloba• pau d’arco.

Consult your physician and pharmacist to ensure the product will not cause youdangerous side effects.

Check with your primary care physician to ensure the therapy you areconsidering will be safe when taking into account your current health status.Some aspects of your health history could put you at higher risk forcomplications. Liver disease, for example, can be aggravated by certain herbalpreparations. Find out about possible side effects and how a given therapy mayinteract with food, alcohol or other drugs.

The cost of some CAHC therapies may also be an important factor for youwhen deciding if you would like to explore a given therapy. Be sure to find outhow much money a therapy will cost up-front. If you have private healthinsurance, inquire with your insurance carrier if it covers any of the costs youmay incur. Most importantly, monitor your response to therapy.

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Can I use complementary therapies as well as conventional medicinetechniques?Integrative medicine, as defined by NCCAM, combines mainstream medicaltherapies with complementary and alternative medicine therapies for whichthere is some high-quality scientific evidence of safety and effectiveness.

A truly integrated health care system is something we all strive for – obtainingthe best and most effective treatments available to keep illness from occurring,and to heal our minds, bodies, hearts, and souls.

As these therapies become better understood and validated with sound scientificresearch, CAHC therapies will become integrated into traditional medicine.

This process of integration is assisted by current trends in conventional healthcare which are focusing more on the complete emotional, physical,psychological, social and intellectual needs of people. There is also increasedattention to the evidence base of treatment and a greater regard for healthpromotion and disease prevention.

Where can I learn more aboutcomplementary and alternative health care?While the Internet provides a wealth of information, thereis no control over the information that is provided to thepublic. Personal stories and anecdotes may be misleading,and it is difficult to validate the information presented. Itis best to use web sites that stem from the government,recognized medical organizations, well-known scientificsources, or academic institutions.

Health Canada offers information regarding CAHC therapies and has specificinformation regarding certain therapies. They also have valuable informationavailable through the Health Protection Branch and the Office of NaturalHealth Products. www.hc-sc.gc.ca

The Canadian Health Network, funded by Health Canada, provides 89 items onalternative health. These include documents from and links to the ArthritisSociety, the Canadian Chiropractic Association, the Canadian College ofNaturopathic Medicine, the Canadian Medical Association, the CanadianPaediatric Society, the College of Massage Therapists of Ontario, theCommunity AIDS Treatment Information Exchange, and Health Canada, to name a few. www.canadian-health-network.ca

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Your provincial or territorial Ministry of Health can provide you withinformation regarding the training and licensing of all health care providers.Links to each of the provincial and territorial government web sites is availablefrom the Canadian Health Portal website. www.pcs-chp.gc.ca

NCCAM is the U.S. Federal Government’s lead agency for scientific researchon complementary and alternative medicine. www.nccam.nih.gov

www.camline.org is the address for CAMline, an evidence-based website oncomplementary and alternative medicine (CAM) for healthcare professionalsand the public.

The National Library of Medicine www.ncbi.nlm.nih.gov/PubMed/ providesfree, open search of Medline, a large biomedical database.

Books and magazines are also a good place to start obtaining information abouta specific therapy. Be cautious, however, as there are no regulations requiringpublishers to ensure the accuracy of the material they print in books ormagazines.

Libraries also offer access to research publications. A few well-designed studiesare now appearing in high-quality, peer-reviewed mainstream journals such as:the Journal of the American Medical Association, and the New England Journal ofMedicine.

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Resources1. Hemophilia Today, Canadian Hemophilia Society,

www.hemophilia.ca/en/1.0.php

2. Handbook for Physical Activity Guide, Health Canada, www.phac-aspc.gc.ca/pau-uap/paguide/index.html

3. All About Hemophilia – A Guide for Families, Canadian HemophiliaSociety, 2001, www.hemophilia.ca/en/13.1.php

4. The Pain Management Book for People with Haemophilia and RelatedBleeding Disorders, Hemophilia Foundation Australia, World Federation of Hemophilia Treatment of Hemophilia Series, Number 22, April 2000,www.wfh.org/ShowDoc.asp?Rubrique=31&Document=259

5. Listing of Hemophilia Treatment Centres are available on the CanadianHemophilia Society website at http://www.hemophilia.ca/en/7.0.php

6. Listing of Canadian Hemophilia Society Chapters and Provincial/RegionalOffices are availalbe on the CHS website athttp://www.hemophilia.ca/en/18.0.php


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Documents

CHS P M W G - Canadian Hemophilia Society vital sign.pdf · representative of other people with bleeding disorders, the CHS developed a survey which was sent to all the Hemophilia